CHD Awareness Week
- Thread starter Southern Gent
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This is awesome! Way to go! :thumbup:
I wasn't around when this was first posted but it hits very close to home. My father was born a blue baby in 1943. He was one of the first of those operated on at Johns Hopkins and was either the first or one of the very first to actually survive. Even after the operation he was given an expected life span of 17 years. He lived much longer (passed at 49) after having married and raising two boys to adulthood. I wouldn't be typing this if it wasn't for the miracles of modern medicine.
Again, way to go!
I wasn't around when this was first posted but it hits very close to home. My father was born a blue baby in 1943. He was one of the first of those operated on at Johns Hopkins and was either the first or one of the very first to actually survive. Even after the operation he was given an expected life span of 17 years. He lived much longer (passed at 49) after having married and raising two boys to adulthood. I wouldn't be typing this if it wasn't for the miracles of modern medicine.
Again, way to go!
The wife has a CHD and was treated at CHOA as a child. She new volunteers every year with camp Braveheart here in Georgia every year (this is her 10th year there). If you haven't already heard about it, it's a great summer camp for children with heart conditions hosted at camp twinlakes. Volunteered myself there my first year in the USA, such a great experience for the kids to meet others going through the same thing.
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the radio station I listen to does a radio-a-thon for the lack of proper term every year for Camp Twinlakes....some of the stories are quite heart wrenching...i am a big softie.
It's a wonderful place and so much hard work goes into it, not just for the camp the wife volunteers at but all the camps for each condition or situation. Couldn't be prouder of the community it creates.
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Justen I am so glad he has got the care, support, and courage to keep growing as he does. Kudos to you for providing an environment where all of that is possible.
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Without quoting everyone and making this post excessively long, thank you so much everyone for your support now and in the future. Unless you have been touched personally by a situation such as Madden's it is truly difficult to grasp the frailty of our lives and it changes your perception of some of the most mundane of events and gives new and greater appreciation of others. I do want to mention to Dagaros though that we have planned for camp Braveheart this year and are so appreciative and in awe of all of the organizations and their people that help children in need and their families.
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Having just met Madden for the first time last weekend at the guild meeting, all I can say is WOW. His energy appeared to be nuclear, and I never would have thought that he has been through all of this. What an amazing kid you've got there Justen!
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Hey all, CHD week is right around the corner and Kids At Heart, part of Children's Healthcare of Atlanta selected Madden to be featured to kick off the week. Madden has also been selected to represent the group for the second year in a row and will be featured on their T-Shirt. I wanted to share his story as it was written by my wife and let everyone know is doing well and thriving. I also wanted to emphasize that the highly skilled and compassionate workers at our Children's Hospitals deserve a huge amount of recognition and without them we would not have so many of our little loved ones with us today, or our sanity. So very proud of my little heart warrior and all the other warriors out there who fight every day. Much thanks to all of you who have followed and kept up with Madden over the years and have offered your support and friendship.
Meet Madden Cimino!
Starting with Madden's story on the first day of
month!
I love to tell Madden’s story and so does he. We are telling it to his 1st grade class this year during CHD Awareness Week. I have documented his entire journey and put it in a 70 page 8x11 book. We are so proud of him. We celebrate his struggles and always let him know that Victory is Sweet! He truly is our heart hero.
Our Madden was born 1/20/11 with a Congenital heart defect. He was born with a large VSD, PFO and DCRV.
Dr. Stevens is our Cardiologist and he is amazing! He and his wonderful Sibley Heart staff in Marietta have always been so helpful, informative and most importantly encouraging. We knew immediately after Madden’s birth that he would undergo a heart surgery within the first few months of life.
On May 17, 2011, Dr. Paul Kirshbom performed open heart surgery on our Madden. He patched the hole, did the DCRV repair and the PFO, primary closure. Madden was in the hospital at Egleston for 1 week and then we went home to recover.
During our time in the CICU I made friends with the nurses and they truly took care of us as much as they did our son Madden. Madden was our first born and is our only child so all this was quite a shock. I had only been a mom for 3 short months when Madden had his first surgery. It was really hard and a huge struggle to have this going on. You feel so helpless.
After his surgery, the nurses and doctors took our worry, stress and helpless burdens away. They truly showed us they were there to take that on and they were there to help repair our child, he was going to be ok. I trusted them fully and for any mother this can be very difficult.
Handing my 3 month old baby over to a medical professional for open heart surgery was the hardest thing I’ve ever done. Seeing my husband break down like a baby and praying they would repair Madden and bring him back to us is a feeling I can’t even put into words.
Every nurse, doctor, aid, cafeteria worker and volunteer made it all better. They treated us like family and we knew we would all be ok. We became friends with these people and other families on the floor. It’s a connection you don’t want to have, but sometimes, when you have these things come up in life you lean on each other and you have this connection for life.
Madden had his 2nd open heart surgery in May of 2016. Dr. Brian Kogon did the 2nd surgery and we left 3 days later. He did an aorta stenosis repair and DCRV repair.
I would have never chosen this life for my Madden, being a heart mom, but I rest easy knowing I have my great friends, my Sibley heart family and my Egleston CICU and step down family by my side.
Meet Madden Cimino!
Starting with Madden's story on the first day of
month!I love to tell Madden’s story and so does he. We are telling it to his 1st grade class this year during CHD Awareness Week. I have documented his entire journey and put it in a 70 page 8x11 book. We are so proud of him. We celebrate his struggles and always let him know that Victory is Sweet! He truly is our heart hero.
Our Madden was born 1/20/11 with a Congenital heart defect. He was born with a large VSD, PFO and DCRV.
Dr. Stevens is our Cardiologist and he is amazing! He and his wonderful Sibley Heart staff in Marietta have always been so helpful, informative and most importantly encouraging. We knew immediately after Madden’s birth that he would undergo a heart surgery within the first few months of life.
On May 17, 2011, Dr. Paul Kirshbom performed open heart surgery on our Madden. He patched the hole, did the DCRV repair and the PFO, primary closure. Madden was in the hospital at Egleston for 1 week and then we went home to recover.
During our time in the CICU I made friends with the nurses and they truly took care of us as much as they did our son Madden. Madden was our first born and is our only child so all this was quite a shock. I had only been a mom for 3 short months when Madden had his first surgery. It was really hard and a huge struggle to have this going on. You feel so helpless.
After his surgery, the nurses and doctors took our worry, stress and helpless burdens away. They truly showed us they were there to take that on and they were there to help repair our child, he was going to be ok. I trusted them fully and for any mother this can be very difficult.
Handing my 3 month old baby over to a medical professional for open heart surgery was the hardest thing I’ve ever done. Seeing my husband break down like a baby and praying they would repair Madden and bring him back to us is a feeling I can’t even put into words.
Every nurse, doctor, aid, cafeteria worker and volunteer made it all better. They treated us like family and we knew we would all be ok. We became friends with these people and other families on the floor. It’s a connection you don’t want to have, but sometimes, when you have these things come up in life you lean on each other and you have this connection for life.
Madden had his 2nd open heart surgery in May of 2016. Dr. Brian Kogon did the 2nd surgery and we left 3 days later. He did an aorta stenosis repair and DCRV repair.
I would have never chosen this life for my Madden, being a heart mom, but I rest easy knowing I have my great friends, my Sibley heart family and my Egleston CICU and step down family by my side.
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Boy looks awesome! Great pic.
Mistwalker
Gold Member
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The shots of you and Madden always make me smile. I love seeing these.
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Justen,
Thank you for taking the time to share and remind us about CHD. Things like this are often easy to forget about when you aren't personally effected by it.
Tell Madden congrats from me!
I had the opportunity to meet Madden and hang out with him and Justen when I visited for the Fiddleback User Weekend last year. Madden is amazingly smart, kind, and full of charisma, a wonderful little guy to be around and talk to. His mom and dad's love and care is very evident.
Whenever it comes to be that I have a kiddo on the way I'll be coming to you for advice because you're obviously doing things right.
Thank you for taking the time to share and remind us about CHD. Things like this are often easy to forget about when you aren't personally effected by it.
Tell Madden congrats from me!
I had the opportunity to meet Madden and hang out with him and Justen when I visited for the Fiddleback User Weekend last year. Madden is amazingly smart, kind, and full of charisma, a wonderful little guy to be around and talk to. His mom and dad's love and care is very evident.
Whenever it comes to be that I have a kiddo on the way I'll be coming to you for advice because you're obviously doing things right.
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- Apr 3, 2015
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Well, we have hit another milestone and as an organization have drawn recognition by the state of Georgia led by Children’s healthcare, Sibley heart, and our great governor Brian Kemp in recognizing the 1 in 100 children who are born with a heart defect. so proud of my son and all the other Heart Warriors out there who fight to thrive and bring awareness for those in need. Kidsatheart CHOA profiled Madden's story on Facebook, so if you are so inclined please give a look and a like.
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